Welcome! This blog reflects more or less my description of living with Usher syndrome, my CI (cochlear implant) journey, my guide dog journey, and any random thoughts I may want to post.

Wednesday, August 19, 2009

Blindophobia

As a young child, I remember seeing a person use a cane and thinking to myself, I am glad I just have a hearing problem. Blindness must be worse.

Of course, little did I know that I would have a vision deteriorating disease that would slowly eat away at the edges of my peripheral world. But I often think of my thoughts and how I may have cursed myself. But maybe that’s what everyone else thinks, too. An automatic, incomprehensible thought of being blind is scary. A darkening world is not something you want to voluntarily live in or wish on someone.

Now that I’ve really let more people know I have vision issues just by using the cane, I noticed a lot of things:

Some people “assume” you are blind.

Children are curious. They stare. They probably don’t realize that I can see them and they continue to stare. Sometimes I want to explain, but I don’t. I have to keep going in the direction I’m headed.

Some have no idea what the cane is and what it’s for. I’ve had someone ask me if that was some kind of metal detector. I kid you not.

I’ve seen adults look at me, the cane, and look away quickly. Like they don’t want to stare or they feel uncomfortable. (I know I would have felt some unease around a “blind” person if I didn’t know what I do know about it.) Some ignore me completely like I’m not there. Some smile. Some look into my eyes as they pass me. Some smile. Some look at me and continue to watch, like a curious child. I guess it’s a novelty. You don’t see a caner every day. (Unless of course, you shop and work with someone who works or shops at the same time you do.) I want to mention, too, that when I smile back and meet their eyes, they kind of blink, surprised. I keep going and let them think whatever they want. I know I’m not faking it and I would not want to call attention to myself by using a cane. That’s just not who I am.

I’ve noticed how some people just don’t know what to say. The other day, a gas station cashier looked at me and my cane and I tried to lighten things up by asking, “Aren’t you going to ask me if I ‘have gas’?” I only got a faint smile for that one. I just wanted to show her I was okay with it.

I just want to say this: Don’t be afraid to say, “I see, “ or “See you later”, or even if they’ve watched any movies lately. It’s normal every day language. By the same token, you don’t have to avoid saying things like, “Hear, hear” when you agree on something or “I heard about that” to a deaf person. It’s just part of conversation. A deaf person wouldn’t take it seriously or literally.

There are some people who know that I don't see well and hear well and they don't know what to make of it. I use the cane in unfamiliar places and where I know a lot of people will be. I don't use it at church or at the school and I must confuse people because I look like I can see and hear.

I have found people to be more helpful. They’ll move a stroller or cart out of my path. Not all of them seem to be “blindophobic” or ignorant.

As I encounter each gradual loss of vision, I learned to adapt, maybe consciously as well as unconsciously. You stop driving in the dark because it’s harder to see. You drive only during the daytime hours. Then you avoid left turns except at streetlights and 4-way stop signs. You avoid backing up as much as possible. You drive on the outskirts of parking lots to avoid shoppers going to their cars or to the store. You find that it’s easier to park at the farthest side of parking lots where it’s least populated and you can drive straight out when you are ready to leave. Soon the “whiteouts” (the adjustment from to the bright sun as you step outside or as you make a turn into the rising or setting sun) affect your daytime driving. You notice that the lengthening shadows of the trees that line the streets make it harder to see in the late afternoon because it’s darker that way. Then you concede that it’s not safe to drive anymore and hang up the car keys for good. You go through a period of depression, then you look into learning to use the cane and use city transit or taxis. You even turn to friends and family for transportation. You learn to ask, ask, ask, and it’s still hard to ask. But the sores a person can say is “no”. So you try again. It keeps me humble.

Other adaptations include scanning with your eyes as much as possible. You do this by moving your head left to right because you can’t just move your eyes. The periphery isn’t there unless you move your head to get that “periphery” into view. You can sit at the table and see your cup, plate, utensils, and dishes of food. You scanned the table. You know it’s all there, though you can’t see it all. The brain seems to make up for the “phantom vision” that isn’t there. You act “sighted” and look “sighted”. You really aren’t ready to be “blind” though you do mention it to co-workers and family and friends. You familiarize yourself with areas so you can move around. You scan, see a chair, and avoid it.

After awhile, more of your vision is constricted, narrowed. You can almost see the spotlight of your vision, with the darkened rim in the edges of your vision. You see something like ripples of water, continuously lapping into the central vision you have. It shimmers, rippling like water, but it’s like it’s stuck in motion. Other times this area is just void, a nothing. Nothing is there. It has no color, like a very thick piece of plastic you can’t see through. In the dark/semi-darkness, that “empty” periphery is spotty, like “snow” on a TV channel that’s not working or aired at that time.

You start to notice that you need larger font point sizes to read better or get reading glasses. You notice that some colors are harder to determine unless you put it right next to each other for comparison. Is that navy blue or black? Light yellow or lt. pink? Brown or hlack? Maroon or brown? You stop buying things in navy blue and stick with black. The list is endless.

Yet here I am, using the cane. I am not any different than anyone else except that I use a cane and wear a hearing aid and a cochlear implant. I am at a crossroads again. How do I label myself? Deaf-blind? I can hear some and see some. It’s easier to say I have low vision or tunnel vision than it is to say I’m blind, because I still have useful residual vision. I can hear with my CI and my hearing aid, yet without them, I am deaf. I can’t hear anything. I might feel things (vibrations), though. An airplane or a helicopter can fly overhead and I will not hear it unless I have the CI and hearing aid on. I don’t have perfect hearing, though.

It’s easier for me to accept my deafness because I grew up with it. Children are resilient. They bounce back and adapt. This is what they know. But my vision loss was gradual and I know what I used to be able to see. I used to play hide and seek in the dark. I used to go swimming in the dark. I used to drive in the dark. It was hard to accept that I can’t see in the dark as well as I used to. It was hard to give up driving. It was like this insidious eye disorder was taking away more than my sight, bit by bit. It was taking away more things I used to take for granted.

With the vision I have now, I could live with it for the rest of my life if I had to. I’m here, living with it. I’ve talked with others with Usher syndrome and retinitis pigmentosa and they all have different stages of vision loss, some worse, some better than others. I cannot comprehend losing more vision, but I know it’s possible and though I don’t want to admit it, it will get worse. I’ll be lucky if it stablizes for a long time.

I must think about other things like learning Braille. Maybe in the future, I might consider a guide dog, but right now I am satisfied with the cane. It’s something I can fold up and put away if I have to. I can’t do that with a dog guide. Not for vanity issues, but just to sit down at a restaurant or something. I don’t want to have the cane sticking out from under the table or something. A dog is always there, for potty breaks (and clean up), exercise, and feeding. I might change my mind later. I don’t know.

I know that I’d like to get better lighting in the house, too. The structure of my house is built so that most of the windows are on the north and south sides and it doesn’t filter in enough light. Cloudy days are best. I can draw up the mini-blinds and it’s just enough light. On bright sunny days, it’s too much, too strong and I would prefer to adjust the blinds so that they are almost pointing up instead of flat. It keeps the direct rays of the sun at bay. It’s funny with this eye disorder, it’s hard to see if it’s too bright or too dark.

Again, I don’t know how I’ll adjust if it progresses. It’s scary, but I guess I’ll adapt and just live with it.

I have my own “blindophobia”. I don’t want to get any worse. I have to leave it in God’s hands. He knows what He’s doing. There’s a purpose for it. He wouldn’t give me more than I can handle. I must be strong enough. It’s scary, though, but I like to think it keeps me close to Him, depending on Him..I am not alone.

Not to mention that in blogging about your journey...you've met all of us!

I love how you said that having this condition has kept you close to and dependant upon the Lord. It's so true. I think for most folks, this life is full of various trials which differ from person to person...but it's how we handle those trials...either striking out on our own strength trying to do things on our own or relying on God's to get us through...that will determine just how victorious we are. And girl, you're walking in victory~!

I do believe that by staying close to the Lord, He's guided you along a path that has led you to the blessings of the CI and the added independence that the cane affords you.

We may not know what the future holds, but we know Who holds the future. He's brought you thus far, and will continue to guide you through whatever comes your way.

About Me

Living with a genetic disorder called Usher Syndrome Type II. It's a gamble-each parent must have the same gene to pass it on to the child. There's a one in four chance of passing it on. One is born with varying degrees of hearing loss and loss of sight caused by a retinal disorder called retinitis pigmentosa (RP).